How many of you have babs?

Hi,
have posted for a long time. I have babs as well as lyme. Started on mepron/zith 5 weeks ago. Just started herxing about two. This is rough stuff. Today awoke with terrible brain fog and so tired.

any one you experience this with babs or treatment? Please help as I always feel i am back sliding when this happens.

JKV

[JackieCalifornia]

Hi there, good to hear from you, but sorry to hear you're having a rough time.

I got Lyme and babesiosis four years ago ... LLMD put me on the same meds you're on.  I didn't feel much worse on the meds than I did off them, so it wasn't difficult for me.  I was on those meds for 16 months (constantly -- my LLMD doesn't do pulsing).  It took care of the babesiosis.  

Do your herxes come and go, or is it constant?  

Are you taking any probiotics?  I was on Florastor, and had a reaction to that which I thought was Herxing, but it wasn't.

What does your LLMD say about the symptoms?

[wonko]

I have always tested positive for it, but my LLMD says that I have the symptoms of it.  I also have Bart, which my LLMD believes to be my biggest issue.

I have not taken mepron.  I have taken Bactrim, which is also active against Babs.

I've had bad Herx's from many different meds, for me the Herx's feel worse than not treating.  I've had Herx's last for many (>4) weeks straight.

Fatigue was a major issue for me for many months.  It has slowly resolved with treatment, and while it is still an issue, it is not disabling for me like it once was.

[wonko]

Whoops, should have said that I always tested *NEGATIVE* for it.  Well, going through a rought time myself, so at least I have an excuse...

[jkv44]

Wonko & Jackie,
that's a long time to be on merpon/zith. At least it took care of it.

the herxs come and go. Today I feel ok except for some nausea.

did you have nausea with mepron?

i'm on florastor. So far, so good.

I just started with the nausea on Friday which lasted most of the weekend. I went to my primary who said the flu was going around with nausea, vomiting etc.

My fatigue is ok this morning.

Wonko, I'm sorry to hear you are having a tough time. I know how you feel.

Are you drinking water? I've been taking ginger tea to help with the nausea. It really helps.

Jackie,
are you on any meds now? How is the lyme, babs?

Look forward to hearing from you.Janice

[JackieCalifornia]

Hope you feel better soon and that your MD is right -- not that I wish the flu on anyone.

I had no problems with Mepron and azithromycin ... I was very surprised how smooth it was.  But everyone is different.

No, I haven't been on any abx for a year, due to the yeast problems I was/am having.  My LLMD doesn't know what to do with me, because the LLMD is totally focussed on treating the Lyme and Ehrlichiosis/Rickettsia and thinks the yeast aspect is a distraction.  It's not.  I have another MD who understands what a mess my whole body had become, and we're working through the yeast thing.  Forget Lyme, I need to be able to take abx for other significant infections in the future!

I'm officially over babesiosis, but have Lyme and what used to be called Ehrlichiosis, both bacterial, and both should respond to doxy, which is what the LLMD has prescribed.  Not quite ready to go there yet; need to go check in with my other MD re systemic yeast infection to see if we're ready to go to the abx again.  Hiring doctors to watch the other doctors:  what a zoo.

Most people are fine with Florastor.  My LLMD said he had never seen anyone react to it the way I did.  I think, based on family history, I may have a genetic tendency to fungal infections, and the massive abx kicked me over into a massive yeast [fungal] infection.  I was so brain foggy from the yeast that I didn't realize there was something serious going on and thought it was just more Lyme symptoms.  My LLMD said that Florastor (which is a yeast) is supposed to 'crowd out' the other bad yeast, but in my case, it just took over and went nuts.  I did some reading in medical journals and found a number of  reports esp from Europe, where Florastor has been used longer than here, about patients having the same reaction I did, esp if their immune systems are suppressed, but also in people like me with good immune systems.  The tone of the medical journals was to be careful with Florastor.  If you find you are getting very bloated and your brain fog returns or gets worse, see your MD!  But likely you will be okay like most people are.

I think you can take Mepron and azithromycin with food, and I would always do that with any medicine if it's not prohibited.  Check the labels.  

Good luck!!  Stay in touch.

[jkv44]

Jackie,
you are such a wealth of knowledge regarding lyme and co.

This babs thing is still so new to me and trying to figure it out.

Since being on mepron/zith, the headaches have kicked in and low grade fever which is 98 or 99at its worse.

Overall feel somewhat ok except for the occassional stomach issues from the mepron.

I know I'm still herxing as I have no appetite, low grade fever, upset stomach, fatigue.

Did you find that on mepron your symptoms got worse? For me, it's the headaches.

HELP!!!

[JackieCalifornia]

You're kind, but I'm just slogging through this like everyone else ... wish I really were on top of this mess we find ourselves in!!

Do you feel feverish when you are at 98 or 99 degrees?  Because 98.6 is supposedly normal .... I can't get above 98.0 in the last few years, and often/usually down in the 96 and 97 range.  Typical Lyme.

I don't remember feeling worse on Mepron/zith, but I was a mess before treatment, so maybe it was just trading illness symptoms for treatment symptoms.  I think I always took the meds with food, something cushy like yogurt or bread, I think ... but it's been a while and I don't remember the foods that conflict with the meds.  You'd have to read the package insert and pharmacy advisory about what you can and can't take with it.  Even tho you have no appetite, even a little food (if permitted by the meds label) should help your stomach, in my experience ... and I have a touchy gut, always have had, so I hear you.

You may be having a moderate Herx ... do you keep a chart/list of your symptoms?  It sounds like an obsessive waste of time, but it helps me keep things in perspective and also to search back and see patterns to what is going on.  I keep it on my computer, in a spreadsheet, but columns in a Word doc would work too.  Columns are:  date; list of all food eaten that day, added as I go along through the day; medications and supplements taken; and how I am feeling, sometimes noting the time of day.  It keeps me from getting lost in the mind mush that is Lyme.  I can go back and search/highlight specific words and am sometimes quite surprised that a symptom has been going on longer than I thought, sometimes months longer, but I hadn't realized it as significant.  Then I can report it at my next visit.

Sounds totally obsessive?  Yeah, maybe, but it helps me.  I review and summarize it before going to a dr's appointment, otherwise the best answer I can often give is ... "Uh, I don't remember.."  As in:  "How long have you had that particular pain?"  "Uh, I don't remember."  Not a useful answer.  I do NOT however take my magic chart with me to the MD's office, because they freak out if they see it.  Silly MDs.

But back to your symptoms.  If it's a while till your next appointment, you might call the MD's office and ask if these are normal side effects and what you can take to soften them, like tylenol or something for the headache, and what to do about the stomach upset.  

I got no headache on Mepron and zith, but I seldom get headaches at all.  It might "just" be a Herx you are having?  But do report to the MD's office and see what they recommend.

Let us know how you do.  Take care!  You're making progress!

[jkv44]

Morning,
I have to say that you are positive and knowledgable. It's nice to hear that someone got over the babs. Sometimes as you know it can get overwhelming reading about all the symptoms of lyme/babs etc.

The funny thing with me and the babs is that I didn't really have many symptoms. So I was a little surprised when testing came back indicating I did.

I really should keep a list of my symptoms as I know you do.

Did you take Artemesin with the merpon for the babs? My doctor just added that on thurs.


I heard that taking burbur drops under the tongue really helps with the herxes. Just some useless info I found on line.

Thanks and look forward to hearing from you.

[JackieCalifornia]

Hi

No, I've never taken artemisinin or any herbs so far.  My LLMD is hardcore for abx and I am only now, since I'm having problems with abx, working up to try abx. Not quite there yet tho.

Interesting about the burbur.  I'm noting that for future reference!

Babesia is cousins to malaria, a bloodborne protozoa, which is icky to even think about, much less *have.*  So it doesn't do that sneaky trick that Lyme does, which is go hide in cysts and cartilege where the abx can't reach easily.  That means in some ways, perhaps, it's easier to cure than Lyme.  I was terribly ill with Lyme & babesiosis, and didn't know which one was worse, couldn't tell the difference.  

But then again, I know someone who had babs and was barely sick at all -- just a little tired -- and the meds had zero side effects for that person.  Go figure.  Different for everyone, and you haven't missed a THING by not being sicker!  :)

But the meds for babesiosis were no problem even for me, and I'm a total lightweight when it comes to getting smacked hard by medications.

Forge ahead!  You can do it!!

[jkv44]

Morning,
With me I can tell the difference between the symptoms because the herxs seem different.

For example when herxing on lyme meds, I have kind of a all over body malaise. I usually get pain in my hands which seems to be one of the lingering spots for the lyme in me.

With the babs herxs, I feel much more feverish, with headache, and flushing. Other than that, not much. Also with this med, mepron, I got a lot more sweating and my fever for the first time since treating was actually 99.9. For the most of treatment when feeling feverish, my temp wasn't above 98.2. My normal body temp before lyme and co was never above 97. My mom is the same way.

I looked yesterday for burbur and even whole foods didn't have it. They ordered it for me.


I looked it up and it said that burbur is for detoxing and helping minimizes herx. Well bleieve me, I ordered it. What can it hurt right? It was about 25.00.

I'm curious what meds are you on now?? Talk to you later. Janice

[JackieCalifornia]

I'm not on anything at all except vitamins and garden-variety supplements (magnesium, DHA, selenium, anti-candida capsules, etc.) but nothing aimed at the Lyme or Ehrlichiosis I have had for a year.

I'm seeing my nonLLMD this week and hope to get some guidance.  The game plan was to address the systemic yeast infection first, and then turn to the bacterial infections, so I'll see what happens.

Would you post again on the effects (good or bad) that you have from the supplements you take?  Would be very interested to know.

Cheers!

[jkv44]

Hi,
I take magnesium, vitamind3, glusomanine, fish oil, calcium, vitamin c.

Have you ever dealt with a sudden onset of heart palp, dizziness, headache, racing pulse, with the babs?? I just had a sudden onset about 4 hours ago and it lasted one hour and then subsided.

I still have major brain fog. Janice

[JackieCalifornia]

It's hard for me to remember now ... I got babesia in 2006, so 4 years ago, got treated the next year and finished treatment about 1 1/2 years ago (then got another tick bite, but that's another story).  My babs tests are negative since then.

One of my initial symptoms with Lyme and babesia was irregular heartbeat and being very ill, so much so that I ended up in the ER twice in one week.  They gave me IV electrolytes and I was a LOT better in very short order -- turns out it was probably magnesium deficiency, since (so I read) the bugs use up Mg from the body.  Once I started supplementing with Mg, I was better, and now that I have Lyme again, I am taking Mg supplements pretty much every day.

Whether that is what is causing your heart symptoms, only your MD can say.  I'd suggest you call your MD's office and report the symptom and ask for their advice.  I see you are taking Mg, so maybe it's something else.  

My heart still does a little tap dance sometimes, but not as bad as those first two episodes.  

I'm taking multivitamins, plus magnesium malate, DHA [omega 3], Vitamin C, Vit B complex, selenium, biotin, Vit E, and Candida Clear [for the yeast infection -- contains a little calcium, biotin, garlic extract, barberry root, caprylic acid, undecylenate acide, grapefruit extract, 2 billion units of acidophilus].

I tried fish oil, but it seems to have upset my gut, so I quit and started taking the vegetarian DHA capsules.  

I've read that glucosamine is sometimes made from shellfish, and I seem to be allergic to shrimp etc., so I don't take that.

I don't take Vit D supplements, because I can't quite wrap my head around the logic behind it.  I try to get a little sun now and again, and that seems to keep my D levels where they need to be.

Bottom line, do report your symptoms to your MD.  Heart ain't nothing to mess around with, but that said, I've had similar symptoms off and of.  So don't be scared, just be vigilant and tell the MD.

Happy Sunday!

[jkv44]

Hi Jackie,
just started experiencing babs flares which are every 7-8 days. Can I just say OMG. I feel like death. The first day wasn't bad but today dizziness, weakness, low grade fever and feel like I can barely walk just from being weak.

did you go through this? Janice

[JackieCalifornia]

Yes, I was a pretty sick chicken with babesia.  I read somewhere just recently (may have already typed this in a previous message, sorry if I repeat) that Lyme with babesiosis magnifies the symptoms greatly, which matches with my experience.

I just dragged around, not able to do much or think straight, like having the flu and a hangover at the same time.  So I understand a bit of what you are going through.  I didn't feel immediately better on the meds, but felt no worse.  

I'm sorry I can't be more helpful.  You know the drill:  Be kind to yourself, eat what you can, drink lots of water, take your vitamins and supplements, sleep as much as possible, take epsom salts baths [gives you magnesium and feels good and relaxing too], and be sure to call your MD if you think something is wrong.  Lyme and babesia messed with my head AND my body, so that makes it even harder to cope with the fear and misery.

Sending you all good wishes for a speedy recovery from what sounds like a Herx ... but remember, only your MD can say for sure.  Don't be a hero!  Call the MD if you need to.

Stay in touch.  Best -- J.

[jkv44]

Jackie,
having major problems with my knees. Almost can't walk. They are so sore that's hard to stand.

I don't know if this is a herx or side effect from the meds.

Either way, quite debilitating to say the least.

do you think I should call the doctor to see if he can change the med to malarone. I heard that this is a tough med)mepron) to handle.

Any suggestions?

Janice

[JackieCalifornia]

It can't hurt to call the MD -- that's what he/she is there for, and if you're feeling that badly, then why not call?  I do the same thing -- try not to call unless I really need to, but sometimes I go too far with the heroics.  

I have had blessedly little joint involvement, but I do get somewhat sore knee joints when I'm having a Lyme episode.  I'm not on meds currently, but still get the knee aches after the bugs have a party.  You may be getting more symptoms as a result of the medication:  the bugs get stirred up and so cause more problems -- so yes, it could be a Herx.

I'm a total lightweight, but was fine on Mepron; never tried malarone.  Everyone is different however, and there may be some other adjustments that can be made by your MD.  You're wise not to adjust without medical advice.

A hot/warm bath with Epsom salts might help?  Dunno.  

But do call the MD.  That's what s/he is there for.  

Hope you feel better soon -- stay in touch, ok?

[jkv44]

Hey Jackie,
thanks for answering. I don't know to call or not.

I'm thinking it's a herx. But never had the knee problems or pain the quads or muscle pain in the legs.

I looked it up and babs can cause both. So at this point, don't know which is which.

I took more magnesium and calcium to see if that helps.

Did you have fevers with the babs? How long did it take for you to respond to treatment.??

Thanks and have a good day. Janice

[JackieCalifornia]

I get knee pains when the bugs have been active, and the discomfort tends to descend from my head and work its way out via chest to lower back to knees and arms to hands and feet and gone.  I don't have the more or less constant knee problems that I have read about, so I might not be a good example.

I don't recall having fever with Babesiosis, perhaps because I also had Lyme, which has suppressed my body temp overall into the 96 and 97 range constantly.

It probably took a few months before I started to see some results, but it was so gradual that it was hard to detect -- but I had both Lyme and babesiosis, and couldn't tell the difference in symptoms between the two diseases.  

After four months, my LLMD changed my meds to something not including Mepron, so I must have been 'cured' of Babesiosis.  I was feeling a lot better, but developed other problems -- babesia is not one of them.

Why would you NOT call your MD?  That's why s/he is there.  People can have reactions to medications ... that's what happened to me on the post-Mepron meds, with a couple of things.  Don't be a hero.  Call!

[jkv44]

Hi,
did you notice the seven day cycle? Mine is pretty much clock work every seven days.

I don't have much of a fever because like you have lyme as well. My temp is usually 97 on a good day. When the babs flare, it's more like 98 which for us is temp and feel sweaty.

I get knee pains as well and the doctor had me stop the mepron to see if the knee and leg pain are from the mepron.

Did you ever stop the meds for a while? I'm a little nervous but the llmd seems to know what he's doing.

I get nervous when things get changed.

Look forward to hearing from you.

Janice

[JackieCalifornia]

Janice,

It was in 2006-08 that I had and got treated for babesia, so it's a little hard to remember the details now ... I don't remember my body temp then, but it's chronically low now.  I felt so awful that it was a struggle just to get through the day, much less be productive at anything.

I have at times noticed a 7 to 10 day cycle of symptoms, but that's more recent times.  I don't specifically recall a cycle effect when I had babesia, but like I said, I was a real mess.  

I hurt all over then, and my knees were not specifically an issue, but everyone is different.  Now that I have Lyme and Ehrlichiosis, my knees are a little cranky sometimes, and it seems to come after the bugs have had their 7-to-10 day cycle party and inflammation (?) seems to work its way out of my body, down to lower back and then to knees and ankles, getting less each day for several days.  Because it takes about 3 to 4 days for the 'wash out' period to occur, it seems like the cycles run in about 7 day lengths, then 3 to 4 days to clear up, then the whole thing starts over, so total 10 or so days.

To answer your specific question, I don't recall my knees being an issue on Mepron.  It was an easy medication for me.

My LLMD does not believe in pulsing ... he has never said why, but he's like General Patton invading Europe:  full speed ahead.  I know there are others here whose LLMDs do pulse meds, so it's a difference in philosophy that the LLMDs are still working out as they figure out what is best to do.  I don't think there's enough knowledge to know whether it's right or wrong, so if my LLMD told me to pulse, I'd probably do it.

I understand about being nervous about the LLMD changing things, but it's good that he's *thinking.*  I always try to ask why, but often don't get much of an answer.  But I ask anyway.  :)   Tell him you're nervous about the changes and ask why.  I know MDs are not big on explanation, but "Because I say so" really doesn't cut it with me.

Hang in there, I know it's nerve-racking, but you sound like you're hanging in there.  Let us know what happens and how you do, okay?  

[jkv44]

Morning,
my llmd doesn't believe in pulsing either. I like just taking it and getting it over with.

My 7 day flares have really come into full swing. I think somehow it's worse than a lyme flare. I mean in the sense that the cycle is so short. Just when it's better it starts all over again.

I backed off on the meds like my llmd said. I can't say there is much of a difference with my issues. My thoughts is that this is such part of lyme or babs and will eventually resolve itself. I do a lot of praying whichseems to help.

I'll get through this like everyone else does.

you should check out the website called lymenet.org. The website is very infoormative and you could give a lot of interesting info that might help a lot of people.

I've learned so much from that site as well as here.

Look forward to talking with you soon. Janice

[wonko]

FYI-It is technically a MedHelp "no no" to advertise/promote other Lyme support sites here.  They may come around and delete or edit posts that do so.